Debbie Thelwell with daughter Alicia, mother-in-law and friend collecting signatures in Nantwich on behalf of the aHUS campaign

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A devoted mum fighting for a life-changing drug to be made available on the NHS has taken a 20,000-signature petition to Parliament.

Debbie Thelwell, from Wistaston, is campaigning on behalf of her 14-year-old son Josh, who suffers from the rare and potentially life-threatening blood disorder Atypical Hemolytic-uremic syndrome (aHUS).

A drug called Eculizamab could treat his illness and save his life – but the Government has yet to approve its funding on the NHS.

Yesterday, Debbie joined fellow campaigners from up and down the country to hand their petition to MPs in the Houses of Parliament.

She had vowed to do all she could to lobby the Government for funding after Josh was diagnosed with the condition in 2009.

Debbie, 45, said: “We found out Josh had the condition in 2009 when he became ill.

“It tends to attack the kidneys and he ended up with kidney failure. They had to blue-light him to hospital in Manchester.

“They had to hook him up to dialysis for a short period. It was absolutely horrendous. We didn’t know what the issue was at that point. To see your child seriously ill was just horrible.”

Sufferers of aHUS experience ‘episodes’ where the disorder attacks the kidneys, often leading to renal failure. Some patients end up needing long-term dialysis or even a kidney transplant.

Josh could experience a relapse at any time – but there is no way of knowing when, or even if, this will happen.

“Next time he could get end stage kidney failure, and then he’d need a transplant,” said Debbie.

“It’s just like having this grey cloud hanging over you, knowing it could happen any time.”

The only real hope of a more certain future for Josh is Eculizamab. But at a cost of £250,000 per patient, per year, health ministers have asked the National Institute for Health and Clinical Excellence (NICE) to decide whether the benefits justify the cost.

Debbie, who is also mum to eight-year-old Alicia, added: “They’ve found a drug that works, but because it’s so expensive, we can’t get funding.

“This drug could be vital for the children who end up with end stage kidney failure and need a transplant. We’ve just got to shout as loud as we can to try and get the Government to listen.